Opportunities and Constraints in Disseminating Qualitative Research in Web 2.0 Virtual Environments.

The Web 2.0 digital environment is revolutionizing how users communicate and relate to each other, and how information is shared, created, and recreated within user communities. The social media technologies in the Web 2.0 digital ecosystem are fundamentally changing the opportunities and dangers in disseminating qualitative health research. The social changes influenced by digital innovations shift dissemination from passive consumption to user-centered, apomediated cooperative approaches, the features of which are underutilized by many qualitative researchers. We identify opportunities new digital media presents for knowledge dissemination activities including access to wider audiences with few gatekeeper constraints, new perspectives, and symbiotic relationships between researchers and users. We also address some of the challenges in embracing these technologies including lack of control, potential for unethical co-optation of work, and cyberbullying. Finally, we offer solutions to enhance research dissemination in sustainable, ethical, and effective strategies.

Supporting aboriginal knowledge and practice in health care: lessons from a qualitative evaluation of the strong women, strong babies, strong culture program.

BACKGROUND: The Strong Women, Strong Babies, Strong Culture Program (the Program) evolved from a recognition of the value of Aboriginal knowledge and practice in promoting maternal and child health (MCH) in remote communities of the Northern Territory (NT) of Australia. Commencing in 1993 it continues to operate today. In 2008, the NT Department of Health commissioned an evaluation to identify enabling factors and barriers to successful implementation of the Program, and to identify potential pathways for future development. In this paper we focus on the evaluation findings related specifically to the role of Aborignal cultural knowledge and practice within the Program. METHODS: A qualitative evaluation utilised purposive sampling to maximise diversity in program history and Aboriginal culture. Semi-structured, in-depth interviews with 76 participants were recorded in their preferred language with a registered Interpreter when required. Thematic analysis of data was verified or modified through further discussions with participants and members of the evaluation team. RESULTS: Although the importance of Aboriginal knowledge and practice as a fundamental component of the Program is widely acknowledged, there has been considerable variation across time and location in the extent to which these cultural dimensions have been included in practice. Factors contributing to this variation are complex and relate to a number of broad themes including: location of control over Program activities; recognition and respect for Aboriginal knowledge and practice as a legitimate component of health care; working in partnership; communication within and beyond the Program; access to transport and working space; and governance and organisational support. CONCLUSIONS: We suggest that inclusion of Aboriginal knowledge and practice as a fundamental component of the Program is key to its survival over more than twenty years despite serious challenges. Respect for the legitimacy of Aboriginal knowledge and practice within health care, a high level of community participation and control supported through effective governance and sufficient organisational commitment as well as competence in intercultural collaborative practice of health staff are critical requirements for realising the potential for cultural knowledge and practice to improve Aboriginal health outcomes.

Motives for meaningful involvement in rural AIDS service organizations.

The research described herein was a three-year exploratory descriptive study to examine how meaningful involvement (MIPA) is conceptualized and experienced in rural regions of the Maritime provinces of Canada. The focus of this paper is one aspect of the research; i.e., what motivates the clients of AIDS Service Organizations (ASOs) in rural Canada to become meaningfully involved? We interviewed 34 people who were past or current clients of ASOs in Maritime Canada and who self-reported as engaging in at-risk behaviors for HIV or living with HIV. The interviews explored participants' perspectives about their motives for becoming meaningfully involved in an ASO. Three themes regarding motives for MIPA were revealed: (1) meeting personal needs; (2) making a difference to others; and (3) recognizing a fit between their skills, goals, needs and the opportunities and experiences within the ASO and with other ASO clients. Participants generally cited more than one motive. This research study contributed to the field of knowledge about the motives for MIPA in which it reveals (1) that MIPA was conceptualized by the rural ASO clients as whatever participation provided them personal meaning (i.e., by fulfilling a personal need, by making a difference, and by recognizing a fit) and (2) the important role that ASO staff and volunteers have in fostering and sustaining MIPA. The study also highlighted a trajectory of involvements that support the need for ASOs to entertain a wide range of roles that are assumed as MIPA.

Examining preferences for website support to parents of adolescents with diabetes.

Diabetes can be stressful as parents seek optimal outcomes for their adolescent with type 1 diabetes. This study examined parents' interest and perspectives related to online diabetes resources. Based on a qualitative description approach, 14 qualitative group interviews were conducted with (i) parents of adolescents with diabetes (n = 29), and (ii) pediatric health care providers (n = 31). Participants were recruited, through a purposive sampling approach, at pediatric centers in three Canadian cities. Qualitative data were subjected to thematic analysis comprising data coding, categorization, and ultimate theme generation. Participants described parental care for adolescents with diabetes as complex and reflective of difficult and nuanced tasks. They recommended the development of a comprehensive parent-based information and support website, and identified crucial elements of the website. Overarching themes comprised the following: complex parenting processes in diabetes care, parents' need for information and support, challenges and benefits of online support, key elements of an online resource, and caution regarding online resources. Based on these findings, website information and support emerged as a viable and desired resource for augmenting pediatric care within clinical settings. Caution was also offered in addressing potential challenges inherent in online support. Findings offer guidance for online support to parents.

Structural factors that promote stigmatization of drug users with hepatitis C in hospital emergency departments.

BACKGROUND: Interventions to mediate the stigmatization of people affected with HCV, particularly those who use illicit drugs, have been largely focused on changing health care practitioners' attitudes and knowledge regarding Hepatitis C and illicit drug use and these have had disappointing results. There is a need for research that examines factors beyond individual practitioners that explains why and how stigmatization of the population occurs within health care and informs interventions to mitigate these factors. METHODS: The research was intended to identify structural factors that contribute to the structural stigmatization of people within hospital Emergency Departments who are current users of illicit drugs and are HCV positive. The research had an interpretive description design and occurred in Nova Scotia, Canada. The year-long qualitative study entailed individual interviews of 50 service providers in hospital EDs or community organizations that served this population. RESULTS: The research findings generated a model of structural stigmatization that greatly expands the current understanding of stigmatization beyond individual practitioners' attitudes and knowledge and internal structures to incorporate structures external to hospitals, such as physician shortages within the community and the mandate of EDs to reduce wait times. CONCLUSIONS: The research reported herein has conceptualized stigmatization beyond an individualistic approach to incorporate the multifaceted ways that such stigmatization is fostered and supported by internal and external structures.

Engagement of parents in on-line social support interventions.

The purpose of this scoping review was to determine what the relevant research informs us about which parents of children with chronic disease and/or disability are likely to engage in an on-line social support program and why they choose to be engaged. The review included 16 peer-reviewed research reports about on-line social support offered to parents of children with chronic disease and/or disability. It was conducted using scoping review approaches recommended by H. Arskey and L. O'Malley (2005). A key finding of this review is that it appears that the development of on-line social support interventions for parents may not have integrated what is known in the field of Internet technology as necessary to engage users. This has implications for nurses wishing to provide on-line social support for parents. As well, it highlights future directions for research, including investigations of which parents are likely to engage in on-line social support interventions and the features of the intevention that will attract and sustain them as participants.

Finding straight answers: identifying the needs of parents and service providers of adolescents with type 1 diabetes to aid in the creation of an online support intervention.

AIMS AND OBJECTIVES: To explore the needs and preferences of parents and service providers of adolescents with type 1 diabetes in an online support intervention. BACKGROUND: Parents experience stress during this time of transition as adolescent conflict is common and the consequences of risk-taking behaviour in combination with type 1 diabetes can be severe. Parents are in need of social support and desired an online intervention. Online support interventions have not been previously designed from the perspective of the users of these interventions. METHODS: Participatory, qualitative design. Fourteen group interviews across Canada (n=60). RESULTS: Participants identified four main themes (Finding straight answers, Making transitions, Struggling with parenting and Connecting with others) within the context of accessibility. Parents described their needs for credible Canadian information, support from other parents, fostering positive family dynamics while shifting parenting roles during adolescence. Connecting with others included finding a social support system and venue to share stories and resources. DISCUSSION: These findings are innovative as these experienced participants desired a blend of professional information and peer informal knowledge and support in an accessible, online format. CONCLUSION: The results of this study will form the foundation of an online support intervention while providing unique insight into the experiences of parents of adolescents with type 1 diabetes. RELEVANCE TO CLINICAL PRACTICE: Parents and service providers indicate the need for information that is trusted, accurate and on a wide range of topics, within a preferred online environment. Supporting parents during this difficult time includes directing them to appropriate and accessible resources, facilitating a positive, healthy process of transition to interdependence, in their parenting of adolescents with type 1 diabetes.

A model of the process of transformation in primary care for people living with chronic illnesses.

OBJECTIVES: The objective of the research was to construct a conceptual framework that explains the process of personal transformation within a primary care context for people living with chronic illnesses. METHODS: A literature search of articles published from 1990 to 2007 in CINAHL, ERIC, Healthstar, MEDLINE, PsycINFO, dissertation abstracts and SocINFO databases, was conducted to identify qualitative research studies investigating personal change in chronic illness or disability. Five hundred and fifty-six articles were identified; the researchers conducted a metasynthesis of a subgroup of these articles whose focus was on transformation in primary care (n = 5). RESULTS: The metasynthesis project presents a model of the conceptualizations of transformation. Transformation in chronic illness is presented as a process of learning about self and the chronic illness in an iterative and continually changing manner. The primary care context has its greatest influence on critical reflection, which occurs in the first phase (initial response). DISCUSSION: This model illustrates the complex processes that occur for someone living with a chronic illness. Health practitioners who understand why and how people transform in living with chronic illnesses will be able to apply this model in determining people's needs and how to assist people during the transformative process.

Ripples in the water: a toolkit for Aboriginal people on hemodialysis.

In 2004-2005, the authors were engaged in a community-based research study with people of Elsipogtog First Nation to determine the causes of and solutions to non-adherence among community members with chronic kidney disease. This study highlighted the need for a toolkit intended for Aboriginal people who are required to undergo hemodialysis at a dialysis unit in a city away from their rural community, so that they are sufficiently educated, supported and resourced to access and experience culturally relevant health care. This paper presents the findings of a two-year community-based research study to develop the prototype or model for such a toolkit. The research involved meeting with nine community members in group meetings at least monthly over the two years to determine what such a toolkit should include and how it should best be presented. It also entailed an extensive review of relevant literature and relevant educational materials, as well as individual interviews with key stakeholders. The project resulted in a culturally relevant toolkit that can be staged according to people's readiness for the information and that fosters collaborative discussions between patients, family members and health care practitioners.

Contextual factors influencing the evolution of nurses' roles in a primary health care clinic.

OBJECTIVES: The purpose of the research was to explore the everyday experiences and responses of stakeholders of a university-sponsored nurse-managed clinic (CHC) in regard to how nurses' roles in the clinic changed over time and the factors that influenced this change. DESIGN AND SAMPLE: The research used a qualitative interpretive description design to interpret participants' accounts of their experience and perspectives as constructed narratives. The participants (N=23) included clients, community members who were volunteers at the CHC, staff of other community agencies or organizations, and nursing or social work students who had a clinical learning experience at the CHC. MEASURES: Data collection involved two interviews, one semistructured, face-to-face interview at the location selected by the participant, and a group interview held in a boardroom at the CHC. Each interview lasted approximately 60-90 min. RESULTS: The research findings revealed the profound effects of the social, political, and economic context in determining nurses' roles within a nurse-managed primary health care clinic. The evolution of nursing roles occurred in reaction to these effects, causing the nurses within the CHC to juggle their priorities and commitments. CONCLUSIONS: The study provides a contemporary example of the political activism work of nurses that is often invisible and illustrates how the commitment of primary health care nurses to social justice contributes in a significant way to the resolution of health inequities experienced by marginalized populations.

Future directions for investigation of fatigue in chronic hepatitis C viral infection.

Fatigue is a common and often debilitating symptom for people living with chronic hepatitis C viral infection. Numerous published reports in the past decade have attempted to address the nature and aetiology of fatigue in chronic hepatitis C; however, this field is plagued with lack of clarity about how hepatitis C virus (HCV)-related fatigue occurs and when it is experienced by the infected person. Consequently, both patients and clinicians alike are unclear about how to mediate or prevent the negative consequences of HCV-related fatigue. In the following article, the authors identify areas of ambiguity and incongruity that have evolved primarily from the underlying assumptions and methodological decisions of researchers in the field of HCV-related fatigue. Research related to fatigue in chronic illness is drawn upon to suggest future directions for investigations and interventions in the field of HCV-related fatigue. Future research needs to move beyond the subjective symptomatology of HCV-related fatigue and begin to account for the multidimensional and contextualised nature of the fatigue experience.

Preventing growth faltering among Australian Indigenous children: implications for policy and practice.

OBJECTIVE: To determine what preventive models or programs are most likely to improve patterns of growth faltering in children aged under 5 years in remote Australian Indigenous communities. METHODS: Nine electronic databases and the websites of key stakeholder, government and non-government agencies were searched. Two reviewers independently assessed articles for inclusion and for study quality. All types of study design were eligible. RESULTS: 140 studies assessing a diverse range of interventions were identified. Of these, 51 articles referring to 44 individual programs and 7 review articles met the review criteria. The evidence for the effectiveness of many interventions to prevent growth faltering is not strong, and any observed effects are modest. Community-based nutrition education/counselling and multifaceted interventions involving carers, community health workers and community representatives, designed to meet program best-practice requirements and address the underlying causes of growth faltering, may be effective in preventing growth faltering. Other interventions, such as food distribution programs, growth monitoring, micronutrient supplementation and deworming should only be considered in the context of broader primary health care programs and/or when there is an identified local need. CONCLUSION: For remote Indigenous communities, development and implementation of programs should involve a consideration of the evidence for potential impact, strength of community support and local feasibility. Given the lack of strong evidence supporting programs, any new or existing programs require ongoing evaluation and refinement.

Engagement as an ethical imperative in harm reduction involving at-risk youth.

BACKGROUND: The focus of the article is the engagement of at-risk youth in harm reduction interventions for illicit drug use. Literature in the fields of education, recreation, health education, and community development suggest that engaging young people in the planning, implementation and evaluation of harm reduction interventions will not only benefit those who participate, but will contribute to the sustainability and effectiveness of the interventions. METHODS: A review of published research about the efficacy of harm reduction interventions for at-risk youth was undertaken. RESULTS: Harm reduction interventions with at-risk youth have focused on researcher-delivered, short-term educational sessions in which engagement is a minor consideration. Assumptions about how to engage at-risk youth are untested and problematic to incorporate when executing harm reduction strategies. CONCLUSIONS: If harm reduction approaches are ethically mandated to address the meaningful engagement of at-risk youth, there are many challenges pertaining to the nature and outcomes of such engagement that need to be investigated in future research.

Living with the stigma of hepatitis C.

Stigma poses significant challenges to those with chronic hepatitis C (CHC), their social networks, communities, and society. This study's purpose was to identify and describe how people lived with CHC and made self-care decisions. Data are presented from interviews and daily recordings of 26 study participants. Experiences of stigma were attributed primarily to misconceptions about the cause and transmission of the disease and its association with illicit drug use. Perceptions and responses to stigma were context-dependent, flexible, and varied over time. Stigma created barriers to access of health services and undermined the social supports required to address self-care needs and illness management. The extent and severity of stigma suggests that interventions to reduce or eliminate stigma will require individual, structural, and systemic changes. Further study is required to clarify the relationship between the trajectory of CHC and the experience and responses to stigma.

A cross-cultural comparison of the developmental evolution of expertise in diabetes self-management.

AIMS: The authors compare the findings of two research studies, one conducted in Japan and the other in Canada, about the developmental evolution of self-management of diabetes. In this article, the authors identify the similarities and differences that exist in the research data, proposing that the differences are situated in the different cultural perspectives of self-management that exist in both countries. BACKGROUND: Researchers have acknowledged that self-management has cultural dimensions. Despite this, however, there are few studies that have provided a cross-cultural comparison of the experience of self-management among different cultural groups. DESIGN: The authors conducted a critical comparative analysis of two models of developing expertise in diabetes self-management. The review included an analysis of the cultural meanings of the various terms and the underlying assumptions of both models. CONCLUSIONS: The models shared many similarities; however, their differences were identified, such as the meaning and interpretation of various words or experiences, and shaped by the culturally bound perspectives of self and health. RELEVANCE TO CLINICAL PRACTICE: The findings serve as a caution to imposing ethnocentric views and interpretations in diabetes care. In addition, they remind us about the importance of asking people with diabetes about what they understand, desire and understand. The findings challenge nurses to reflect on how the development of self-management of diabetes in various national contexts is influenced by health care practices that focus on control or harmony.

Methodological issues in interviews involving people with communication impairments after acquired brain damage.

Qualitative research has made a significant contribution to the body of knowledge related to how people experience living with various chronic diseases and disabilities; however, the voices of certain vulnerable populations, particularly those with impairments that affect their ability to communicate, are commonly absent. In recent years, a few researchers have attempted to explore the most effective ways to ensure that the voices of people with communication impairments from acquired brain damages can be captured in qualitative research interviews; yet several methodological issues related to including this population in qualitative research remained unexamined. In this article, the authors draw on insights derived from their research on the experiences of adult survivors of stroke and traumatic brain injury to describe methodological issues related to sampling, informed consent, and fatigue in participant and researcher while also making some recommendations for conducting qualitative interviews with these populations.

The depiction of stigmatization in research about hepatitis C.

In the past decade, there has been an increasing emphasis by researchers regarding the stigmatization of people who are hepatitis C positive as they seek health care. Because the vast majority of people with hepatitis C have a history of injection drug use, they are frequently assumed by practitioners to be injection drug users (IDUs), blamed for acquiring the disease, and viewed as irresponsible, immoral, and unworthy. Such stigmatization may cause people who have hepatitis C to avoid testing, treatment and care, as well as to not disclose their hepatitis C or injection drug use to practitioners. The purpose of this paper is to critically examine the representation of stigmatization in 21 published research reports from 1995 to 2006, with a specific focus on how these depictions have shaped the current understanding of interventions to address stigmatization of people with hepatitis C by health care practitioners. We will identify two themes in this literature: (1) hepatitis C-related stigmatization in health care settings arises primarily from practitioners' negative views of injection drug use, and (2) practitioners' negative attitudes toward people with hepatitis C are the result of their lack of awareness and/or information about the disease and/or about injection drug use. We will illustrate that similar themes have informed anti-stigma initiatives in other diseases, notably HIV/AIDS and mental illness, which have had little sustained effect in changing practitioners' behaviour toward the stigmatized population. In conclusion, we will call for research that considers factors beyond the individual practitioner as contributing to the stigmatization of people with hepatitis C, such as social, structural and institutional forces that shape practitioners' interactions with people with hepatitis C in health care settings.

A meeting of minds: interdisciplinary research in the health sciences in Canada.

Brought together by the newly formed Canadian Academy of Health Sciences (CAHS), recognized national leaders in the 6 health sciences disciplines consider the environment for conducting interdisciplinary health research (IDHR) in Canada. Based on first-hand knowledge and thoughtful reflection, the authors argue that although much progress has been made in support of IDHR in Canada, the practical experience of researchers does not always bear this out. This article examines government, industry and academia to identify the cultural and structural characteristics that demand, promote or prevent IDHR in each sector. At its heart is the question, How can universities best support and enhance IDHR, not only for the benefit of science, but also to meet the growing needs of industry and government for intellectual capital? Focusing on the predominant health sciences disciplines, the authors define IDHR as a team of researchers, solidly grounded in their respective disciplines, who come together around an important and challenging health issue, the research question for which is determined by a shared understanding in an interactive and iterative process. In addition, they suggest that IDHR is directly linked to translational research, which is the application of basic science to clinical practice and the generation of scientific questions through clinical observation. This analysis of academic, industry and government sectors is not intended to offer rigorous data on the current state of IDHR in Canada. Rather, the goal is to stimulate research-policy dialogue by suggesting a number of immediate measures that can help promote IDHR in Canada. Recommended measures to support IDHR are aimed at better resourcing and recognition (by universities and granting agencies), along with novel approaches to training, such as government-and industry-based studentships. In addition, we recommend that professional organizations reconsider their policies on publication and governance. Although intended to maintain professional scopes of practice, these policies also serve to entrench disciplinary boundaries in research. We conclude by suggesting a number of research questions for a more rigorous assessment of the climate for IDHR in Canada. We call for an inventory and comparative analysis of academic centres, institutes and consortiums in Canada that strive to facilitate IDHR; an examination of the impact of professional organizations on health research, and on IDHR in particular; and a systematic review of research training opportunities that promote IDHR, with a view to identifying and replicating proven models.